Diagnosis day

In her blog about special needs children for Today’s Parent, Anchel Krishna describes receiving her daughter’s cerebral palsy diagnosis in a very straight forward, calm manner:

And that’s when the fog came in, and all I could think about was not crying in front of the doctor…. Then she proceeded to tell us that she was confident Syona would sit independently one day, but not sure if she would ever walk. And just like that, life changed.

I can’t read this without thinking about the day we got Deane’s diagnosis. I can’t say I was as calm as Anchel.

We got Deane’s official diagnosis a month after he was born. He was born at 31 weeks by emergency C-section because his heart rate had fallen. The first reaction of the doctors was that at 1744 grams (3 lbs, 13 onces), he was big for a preemie.

They did a head ultrasound shortly after he was born and saw nothing. The first month was full of incremental progressions – getting off the ventilator on to nose prongs, eliminating the bradycardias (his heart slowing because he would forget to breathe), learning to tolerate breast milk and strengthening his sucking function.

All this time, the doctors kept saying that he seemed “floppy.” He was not curled up in the fetal position. He didn’t seem to move that much. They didn’t have an explanation, it was just a concern.

Then a month and a day after Deane was born, they did another head ultrasound. The doctor came into the NICU and told me that they had found significant damage to his brain in the area that controls his legs. We were scheduled to have a meeting with the follow-up team the next day.

I can’t remember my reaction to this conversation. I was such an emotional wreck in general that I think the nurses were as worried about me as they were about Deane.

That evening we spoke with a friend who is a paediatric neurologist. We told her what the doctor had told us. She said they were going to tell us that Deane had cerebral palsy. I’m sure she explained a bit about what it was, but I don’t remember much of the conversation beyond the cerebral palsy part.

Any courage I got from being forearmed with information dissolved when we went to the meeting. We were taken in a boardroom with a large table around which sat the doctor, at least one of our nurses and some other people I had never met – the social worker, a physiotherapist and perhaps some others. It’s all a bit of a blur.

The doctors went through the medical explanation and told us that some of the cells in Deane’s brain that control his lower body and legs had been damaged when his heart rate fell at the time he was born. They labelled it cerebral palsy and told us it won’t get worse.

Then they asked if we had any questions. Because this was the first that I had heard that it would affect his lower body, I wanted to know about his bladder control. In my head, I had awful images of people in wheelchairs who smelled like urine and that was the worst thing I could imagine for my son.

I don’t know what I actually said. It clearly wasn’t too coherent. As I attempted to ask the question, I started crying. The doctors thought I was asking about his sexual function. That was the furthest thing from my mind. I didn’t have the will power to attempt the question again.

Thinking about it more than 14 years later is still hard. It’s gut wrenching to read the journal we kept for Deane during the time he was in the hospital. The ups and downs, the brutal honesty of the doctors’ words and the telling days we didn’t write because we just couldn’t.

But as tough as it was, I don’t see Deane’s diagnosis day as the day that changed our lives. It’s just a label. Like all parents, the day Deane was born was the day that changed our lives. That day we embarked on a wonderful journey with a courageous little boy.